organised by the Royal Society of Medicine and The ME Association, Action for ME, AYME, The 25% ME Group and The Tymes Trust

‘Medicine and Me’ conferences, initiated and developed by the Royal Society of Medicine, are specifically designed for patients. These meetings bring together patients, their families, carers, advocates, patient support groups, clinicians and researchers to discuss care and research issues in a particular condition.

This ‘Medicine and Me: ME and CFS’ conference is organised jointly by the Royal Society of Medicine, The ME Association, Action for ME, AYME, The 25% ME Group and The Tymes Trust.

‘Medicine and Me’ meetings aim to provide a forum in which patients’ concerns about their illness are given top priority. The meetings provide an opportunity for patients and their families to share experiences, to hear about the latest research and treatment, to discuss treatment choices and access to treatment, and to question the experts on a wide range of issues.

This meeting will focus on the difficulties and delays in diagnosis, ME and CFS in children and adolescents, the existing range of treatments, and the latest research and its impact on the development of new, disease-modifying treatments.

The audience at ‘Medicine and Me’ meetings typically comprises patients, their families, carers and advocates, representing at least 70% of those present; and clinicians and researchers, representing not more than 30%. Clinicians will include doctors, specialist nurses and all other health professionals involved in the treatment and care of patients with ME and CFS.

“Next year also, patients and carers will be invited to attend the Royal Society of Medicine’s (RSM’s) ‘Medicine and me’ conference on M.E. on Saturday 11 July in London. ‘Medicine and me’ meetings bring together patients, carers, advocates, patient support groups, clinicians and researchers to discuss care and research matters of interest to patients with a specific condition. It will be a great opportunity for face-to-face contact with some of the leading M.E. clinicians and researchers in the land, so I hope those who are well enough will be there. Booking will be essential. Further details will be posted in InterAction, on our website and on the RSM website at www.rsm.ac.uk

A member of the ME internet community has created a website to support the NICE Guidelines court case(s). This is an unofficial site and not connected to the organisers but for supporters who want to make the hearing a success.

In the weeks before the RSM’s controversial London “CFS” conference, four of our leading ME patient organisations had issued position statements in response to a statement published by Action for ME (AfME) in defence of Sir Peter Spencer’s participation in this event.

Yesterday, I approached The ME Association, The Young ME Sufferers Trust, The 25% M.E. Group and Invest in ME to enquire whether these organisations have issued or intend to issue position statements on the RSM’s CFS regional conference taking place in Bristol today or have made any arrangements for literature to be handed out to conference attendees. A week ago, I also contacted the Bristol ME Support Group for their position on this conference and to enquire what action they might be taking.

Simon Lawrence says that unfortunately he only recently became aware of this conference through the grapevine and that this was probably mainly due to his own ill-health. The 25% Group have therefore no arrangements in place to make a statement concerning this and have been unable to campaign because of the lateness.

Jane Colby says that The Young ME Sufferers Trust has been liaising with the RSM about redressing the problem of these conferences in the future; that the Trust has made its position clear that the speakers who are taking part will need to be balanced by different speakers in another medical conference. With regard to the Bristol Conference, Ms Colby says that she had got the impression that another demo* was being organised but that it now seems that this may not be the case after all. However, the Trust’s position is the same as it was for the London conference, because the Trust expects the same messages to be expressed by these speakers.

*Ed No announcement had been made that a demonstration of any kind had been organised for Bristol. A notice had been circulated by Gus Ryan on some internet forums and e-lists asking for anyone interested or who knew of anyone who would be interested in organising/attending a gathering outside the conference to contact him.

I will be commenting on these responses after I have heard back from The ME Association and Invest in ME.

Before the controversial RSM’s London CFS Conference had taken place in April, it was already known that a regional one day conference on CFS had been scheduled by the Royal Society of Medicine Wessex Region for Bristol, for 18 September.

This conference takes place today and once again is intended for medical and allied health professionals, only.

I had been alerted to this event by Neil Riley, Chair of the ME Association Board of Trustees, on 13 April.

I flagged up this regional conference in a posting on Read ME UK Events site on the same day; the site received just under 3000 hits during the month of April, alone.

Since then, I have flagged up this Bristol conference several times on both Read ME UK Events and ME agenda site.

I have also put out a copy of the Agenda for tomorrow’s conference on the Co-Cure mailing list together with the Agenda for a conference on Chronic Fatigue Syndrome in Children and Young People by the Royal College of Psychiatrists South West Division Training being held in Devon, on 24 October.

Dr Esther Crawley, who was a member of the NICE Guideline Development Group, will be presenting at both the RSM’s Bristol conference and the Royal College of Psychiatrists conference. Click here for Agendas for these meetings.

In the run up to the RSM’s London CFS Conference, I had launched a Postcard Campaign to help raise awareness of the conference itself and to encourage the ME community to write in to the RSM and express their concerns. This was just one of a number of initiatives around this conference.

I’ve already mentioned, here, that unfortunately due to personal circumstances I have not been in a position to undertake a Postcard Campaign for the Bristol CFS Conference.

Given the interest in the RSM’s London conference in April, the ME community and the organisations which represent our interests have been notably subdued about the conference taking place tomorrow.

Although this is a regional conference it has implications for all of us in the UK, and internationally. There are many of us who consider that the influence of Professor Peter Denton White is equal to that of Professor Simon Wessely, and Professor White is giving the same presentation in Bristol that he gave in London, in April. There is also a presentation on behalf of NICE.

But as a regional conference, it has particular relevance to residents of the Bristol area for it is their medical professionals – their local GPs, medical trainees and allied health professionals – whose bums will be on the seats at UBHT Education Centre, tomorrow.

To the best of my knowledge no position statement has been issued by the Bristol ME Support Group whose members are amongst those for whom this conference has most relevance. On Saturday, I contacted the Bristol ME Support Group to ask what the Group’s position on this conference is, whether they had issued a position statement and whether the group were taking any action or had written to the media or to the RSM?

I’ve received no response so far on behalf of the group.

In March/April, AfME had issued a statement about Sir Peter Spencer’s participation in the London RSM Conference and this was followed by responses in the form of position statements from the ME Association, The 25% ME Group, The Young ME Sufferers Trust and Invest in ME. Full copies of all these positions statements were posted on both blogs and extracts were included in the “On a Postcard, please” Campaign Flyer. Paul Davis of RiME also provided a brief position statement specifically for inclusion in the Flyer.

Our patient organisations have also been notably muted on the issue of this Bristol conference.

Yesterday I contacted the ME Association, The Young ME Sufferers Trust, The 25% ME Group and Invest in ME to enquire whether any of these organisations have issued or intend to issue position statements on the Bristol conference or have made any arrangements for material to be handed out to conference attendees.

The forthcoming Royal Society of Medicine (RSM) Conference, “Chronic Fatigue Syndrome” in Bristol on 18 September 2008, is an unwelcome example of how a small but very influential minority of the medical profession is stubbornly refusing to listen to the very group of patients it claims to serve.

Even before an identically named conference was staged in London on 28 April 2008, this one had already been timetabled with the same leanings, some of the same participants and lectures. Both would always go ahead despite an unprecedented amount of communication – perhaps five or six times the usual for other M.E. issues, with some very ill people moved to write for the very first time – to the RSM, the press and one eminent M.E. specialist even wrote to The Queen.

The serious concerns now, as they were in April and as they will be in the future, if the RSM persist in ignoring M.E. sufferers, are that there is a bias towards a psychiatric view of the illness, promotion of treatments intended for illnesses of a psychiatric origin, in line with the NICE guidelines, a preference for the name Chronic Fatigue Syndrome and a lack of consideration and funding for more promising biomedical research.

The majority received no reply at all. Those who did will have been frustrated or angered, rather than comforted or appeased at the abrupt, defensive, arrogant tone delivering, sometimes, factually incorrect content about the conference’s organisation and content. Those who were told that there are some events to which M.E. patients are invited will wonder why they are excluded from any.

It did go ahead, the effect of a small peaceful protest of a dozen or so quite severely affected people, some in wheelchairs, thwarted by the simple device of closing the gates at one entrance to the building.

M.E. sufferers will wonder why one of the speakers, this time, is billed as “Person with CFS/ME”, when her principal role is as Chief Executive of the sister group of the only other M.E. organisation to have been invited to speak because they are more sympathetic to the NICE proposals than every other M.E. group which, without exception, have published responses of varying degrees of opposition.

They will also hope that there is not a repeat performance of the difficulty of and delay in, transcripts and videos of the proceedings becoming available.

I anticipate an even greater clamour of protest, this time than last, perhaps with new voices raised but, I predict, that these few will still decide the fate of M.E. sufferers without the proper scientific mandate for doing so.